A common urinary tract infection left Danielle with chronic symptoms that doctors misdiagnosed as interstitial cystitis (IC)—an incurable, yet questionable, urinary syndrome that is now under heavy scrutiny. Once she found a doctor who understood her condition, she began a treatment that targeted her infection. Read more about Danielle's story.
After frequent international travel for work, Julie developed a series of complex symptoms that were badly impacting her health. Her symptoms were put down to an auto-immune condition that she had to live with. Six years on she developed further symptoms – this time relating to her bladder. Her doctors explored and treated several problems that were identified, but her bladder symptoms persisted. After eight years of managing bladder pain and incapacitating reduced capacity and frequency, and undergoing various disappointing treatments, she decided to use her academic skills to find a proper solution. She consulted with an Australian urologist who recommended she read 'Cystitis Unmasked' by the late Professor James Malone-Lee. They both agreed she would trial a treatment for chronic bladder infections. Within weeks, Julie's bladder symptoms started to vanish and her life finally took to a turn for the better. Read more about Julie's journey to reclaim her health.
Online information and support groups can be great places to link with others who are in a similar situation. This can help reduce feelings of isolation often experienced by people suffering silently with persistent lower urinary tract symptoms (LUTS). Online groups allow for the sharing of information and personal experiences and are good places to access support—or to support others. We had a chat with the administrators of the Chronic and Recurrent UTI Support Group (Australia and New Zealand)—a Facebook group focused on science-based discussions around diagnosis and treatment for chronic UTI. The group has a strong emphasis on exploring solutions to overcome the challenges of accessing treatment in our region. Online support groups are not for everyone but they can play a helpful role for many people who are seeking information and support.
Jean shared her story with us in May 2019. After menopause things had started to go wrong. Among her worries, Jean had developed UTI symptoms but her urine tests kept coming back negative and she was prescribed antidepressants to deal with her increasing anxiety. She refused to accept her problems were psychological and she continued to search for answers. Eventually she was diagnosed and treated for a chronic UTI. Jean found Hiprex and Chinese herbs was the answer for her and she improved in leaps and bounds. Three years after completing her combination treatment, Jean remains happy and well. Read Jean's updated story.
Elizabeth was struck with gastroenteritis while holidaying in Hawaii. Within days she had also developed a urinary tract infection (UTI) and was treated with antibiotics. She responded well to the treatment but several weeks later some mild urinary symptoms returned. Although the subsequent test from the lab was positive for a UTI, she was not informed and did not receive the necessary follow-up treatment. Her UTI symptoms continued to get worse and by now her urine tests were negative. This is when she was told she had interstitial cystitis (IC). Elizabeth could not get past the feeling that her UTI in Hawaii had never fully cleared. Although her doctors insisted she was wrong and there was no infection, she was determined to find the answers she needed to get better. Read more about Elizabeth's chronic UTI story here.
When Samantha felt a urinary tract infection (UTI) come on, a negative test at the Emergency Department sent her on a pathway she never expected. In no time she was diagnosed with interstitial cystitis (IC) and she underwent repeated procedures and trialled a huge variety of medications that did nothing to stop her bladder symptoms becoming worse. When she exhausted all options offered by her doctors, she turned to an online group for emotional support. When she heard about chronic UTI and the diagnostic failures of UTI dipstick and culture tests, she instinctively knew this was what she had been going through for the past six years and sought the advice of a doctor who knew how to diagnose and treat chronic UTI. With endometriosis, an ovary cyst and pudendal neuralgia having also been diagnosed, she took a multi-faceted approach to her treatment. Nine months in, Samantha is relieved to feel normal again and she has become passionate about encouraging people with confusing health conditions to find the strength and support to advocate for their own health.
Linda had bladder issues for as long as she can remember. Even as a child she was aware she needed the bathroom more than most. It was inconvenient and sometimes embarrassing, but she developed strategies to manage social events without drawing too much attention to her toilet trips. It was after menopause that her bladder symptoms escalated and her strategies and short-course antibiotics stopped working. Linda did some research and asked her GP to refer her to a clinic specialising in chronic UTI and other bladder conditions. At her first appointment she was diagnosed with a chronic UTI and she has never looked back. Read how Linda went from an entire lifetime managing a troublesome 'weak bladder' to living a fulfilling, fully productive and happy life.
Diane started to get recurrent UTIs several years after surgery for urinary incontinence using transvaginal tape (TVT). The surgery was successful but for a time she needed a catheter to empty her bladder. After a routine colonoscopy and stopping hormone replacement therapy (HRT), a tsunami of UTIs soon followed. After completing a short course of antibiotics, her infection returned without fail. This happened time and again and she was having UTIs monthly. She learned about chronic UTI through an online support group and asked her urologist to trial her with an evidence-based treatment protocol for chronic UTI used in the United Kingdom. With continuous, full dose antibiotics for six months, she is thrilled to report she has been UTI and symptom free for two years. Read more about Diane's story here.
Kyla's recurrent UTI began in her late teens. The infections were so regular and persistent that it completely dominated her 20s. Each time she had sex she would end up with a UTI and in acute pain at the hospital emergency department. She was so ill dealing with a UTI, or getting over one, that she missed out on socialising with her friends and having fun—instead she was often home in bed wondering what her future held. She was referred to specialists who ordered all types of bladder tests and procedures. Nothing worked and she was discharged back to the care of her general practitioner (GP). The GP referred her to another UTI specialist, but this time was different. The specialist diagnosed her with a chronic UTI and started a treatment protocol that turned her life around. Her improvement has been slow and bumpy, but after seven years she is living a normal life and is sure she will be off her treatment very soon. Read more about Kyla's story and her tips for others like her.
Laura's experience with urinary tract infections (UTIs) was limited. She'd only had two UTIs before, but her third was different. It did not fully respond to antibiotics and her symptoms returned within days to weeks after each prescribed treatment. She went through the usual process of referrals and investigative tests and found no answers. After reading information online about chronic UTI, she knew instantly this is what she had. She met with a new GP who thought it was likely she had a chronic UTI and agreed to treat her. Months into her new treatment regimen, Laura had a video consult with a leading chronic UTI doctor in London and they decided upon working with her existing GP to continue her treatment. Nine months in, Laura is almost back to her old self and is looking forward to finishing her treatment. You can read more about Laura's success below.